life after treatment...

yesterday was the one year anniversary of the end of treatment, which is a big deal in the cancer world. i intended, of course, to write this post yesterday...but nine hours of class put a hold on it until today.

during diagnosis and treatment i remember thinking there was no life after treatment, that i would never have any normalcy in my life, and that i wouldn't be able to move on. i became so enmeshed in my cancer identity that i didn't know what else there was. and then i reached that traumatic and exciting day when i finished treatment. exciting for obvious reasons, but traumatic because i lost the safety of active treatment and seeing a doctor every week. so, what is life like after treatment, you ask? here's what it has been like for me....

i won't sugar coat it, because i made a pledge to be honest here...those first few months were absolutely brutal. aside from the physical recovery, which in my case included life limiting fatigue, itchy skin, and a touch of shingles...there's the mental and emotional recovery. i was sad, i was anxious, i missed my doctors and nurses, i missed the attention, i missed the reassurance that i was fine, i hated people who pretended i was 'back to my old self' and acted like nothing ever happened (still hate this), i was afraid to plan for anything in the future - even a month away, i didn't see myself when i looked in the mirror, i wanted to ditch my wig but i hated the way i looked without it, i would get frustrated and cry sometimes because the recovery was so slow, and i just wanted to feel whole again. no one prepares you for this...the whole world expects you to be happy that you're done and move on. but, the moving on takes time. patience is probably the hardest thing during this time because we all just want to be 'normal' again...but, it's a process...and it gets better.

so, so much better. now, a year out of treatment cancer isn't always the first thing on my mind. anxiety doesn't control me. i still have energy at ten o'clock at night. i think about the future every single day with excitement (and maybe a tiny twinge of fear that continues to fade). when i look in the mirror i see myself. i smile when i take a deep, unrestricted breath. i focus my health on exercise and eating well instead of surviving. i feel more whole than i've felt in a long time.

but...one thing that has become more challenging is to remember my perspective. when i was going through diagnosis and treatment, i promised myself i would never, ever lose the perspective that i gained from the experience...that every day we wake up is a reason to be grateful, that life is a journey, that there's nothing that can compare to beating cancer, and that i have gotten so much more than what was taken from me. and it's not that i've lost the perspective, but life can get crazy, and things can get overwhelming, and i have to make a conscious effort to pause and reflect when i find myself losing that perspective....

...like the times when grad school gets overwhelming and i let everyone's stress get to me...i remind myself that the worst thing that can happen is i don't get my degree...life wouldn't end (as some of my classmates seem to believe)...

...or the times when i complain about my hair, or get all worked up about how imperfect by body is...it's the reminder that i have hair, and that my body is healthy and that's all that matters...

...or the moments when i realize i'm just going through the motions...and i remind myself that life is a journey, and we're responsible for making each moment what it is.

i suppose that it's all part of the process...and the beauty is somewhere in the balance of perspective and tolerance. i imagine somewhere along this path i'll find that perfect balance, but for now, i continue to push forward and to take the experience for what it is...appreciating that all of this has become part of my journey, and there's meaning in every bit of it.

(and a full head of hair...check it out)

'may i accept the journey for what it is, not what i think it should be'

as the days in april wind down, i realize i owe an update here. i intended to write one after my visit to dana farber last month, but i never really got around to it. all went well - blood work was perfect, exam was fine, etc. i feel so grateful, but for some reason this visit just didn't put my mind at ease. to be honest, i've been struggling lately - to keep my mind off of the 'what ifs' and to find the same confidence i had before. i know this is part of the normal struggle, but it makes me feel weak. i've tried to decide where i want this blog to go now that i'm not updating every other week with my treatments, and when i posted honestly about how hard this all really is, there was an overwhelming response of those of you who have experienced it yourselves. so, i will continue to share my experiences, and be more honest than i've ever been....

i've done a lot of reflecting on why i'm having such a hard time lately. maybe it's because i've been doing a lot of planning for the future, and i still have that moment of pause when i think 'what if?'. those moments are much less powerful now, but it's still there. or maybe it's because i'm always surrounded by cancer...in the support group i facilitate, in the work i'm doing professionally, and in the online forum i'm a part of. or, maybe it's because i'll be a year out of treatment this thursday - a huge milestone for us hodge warriors. or, maybe because i'm simply human. a human who's experienced something huge, life changing, and powerful.

it's ironic, because i spend most of my time telling other cancer survivors that this is normal. i say it in my support group, i say it in my work, and i say it in almost every paper i write for school. but it's really, really hard to tell it to myself. to feel that this is normal, and that it will all pass, and you know what? i'll probably be fine. it's just been so permeating lately, more so than usual...and that's distracting.

recently in my professional/student role i have been doing a lot of work on detecting psychosocial distress in cancer survivors (anyone who has been diagnosed). the topic came up about those who are harder to pick up because they minimize - they tend to say everything is just fine when it really isn't. they take on a heroic role because they feel as though they have to keep everyone going. somewhere in the middle of this discussion, i realized i knew a whole lot about these people without having read much on them in the literature. then, i paused. i'm talking about myself. i'm talking about all of us who say we're fine because we're afraid of letting those who love us know our fear...because we're afraid if we say it out loud it will define us...afraid of the stigma of needing help...afraid of being weak. such a pivotal moment for me to be able to step back and realize where i'm at, what i still need to work on for myself, and how i need to give myself a break....

having cancer has brought such a richness to my life, to my relationships and to my career. i feel lucky to be alive every single day. i'm so passionate about the work i'm doing that it never, ever feels like 'work'. i've reached the point where i no longer question whether or not i'm capable of doing work with the oncology world - i know i am. having my moments of being sad and scared only make me more connected, more aware and more dedicated to help others through this. but, i'm going to have scary days, and sad days. mostly, though, i have good days - excellent days, even. the best days of my life.

the other day in class we had to write mantras for a mindfulness exercise. i wrote 'may i accept the journey for what it is, not what i think it should be.' i have a lot more work left to do, but i know that realization is the first step to acceptance. so, onward with the journey...